Chronicling the adventures of one amazing, funny, sweet, outrageous young lady, who happens to have CHARGE syndrome!

Saturday, August 16, 2008

Tonight is the Big Show

Well, after a week of crazy rehearsals, including one 9 1/2 hr day, Kennedy will be performing with her group tonight in the 'Summer Theatre Jam' at the Imperial Theatre tonight. I am so excited for her; I would've loved to have had the opportunity to perform at the Imperial Theatre (it's really an amazing place that was restored after my music career was finished!), and here is my dolly doing her SECOND show there. She had also danced there a couple of years back.

We are having a relaxing morning as she has a two hour practice this afternoon followed by the show this evening. I am so excited for her. I will be posting pics (if they let me take any...it's pretty strict there) of the show and if not, some pictures from after the show.

WELCOME!

Today is...

Team Kennedy CIFC

What is CHARGE Syndrome?

CHARGE syndrome is a recognizable (genetic) pattern of birth defects which occurs in about one in every 9-10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. The vast majority of the time, there is no history of CHARGE syndrome or any other similar conditions in the family. Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. Most have hearing loss, vision loss, and balance problems which delay their development and communication. All are likely to require medical and educational intervention for many years. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations.

Continued research is needed to help us understand the medical and developmental challenges facing individuals with CHARGE. Better understanding will lead the way to interventions, therapies and educational strategies which can help people with CHARGE syndrome overcome many of the obstacles in their lives.

One of the hidden features of CHARGE syndrome is the determination and strong character these children display.